Light at The End of The Tunnel?

I feel like from being sick i lost my identity. I feel as if i was once a person and now i'm not.

Past interests aren't interesting.
The things i once loved cause me pain.

In my mind i can't even separate my sickness from myself.

I feel so lost, so desperate and i'm losing sight of the light at the end of the tunnel.

I feel so alone and its an endless swirling of dead end specialists, testing, bills, stress, special diets and pills.

So tired of being tired.

I just want to not be called interesting by my doctors.

I die a little more every day just hoping to be boring one day, to live a "normal" life.

Its all too much.

4.14.14

HELLO LYMIES!

So many things have happened since we last spoke. err well from when i spoke and you read haha. 

So BIG things have happened

I moved!! Little girl in the big city, well its not Boston but its fifteen minutes away and super close to work which is amazing. As many people battling auto immune disorders understand all the extra rest time you can have is a total godsend. My place is beautiful and i'm finally starting to really get settled and explore the area and really call this my "home". I share it with three other people that are rarely home which means i get a humungooo gorgeous kitchen all to myself! Not to mention there is a totally gluten free health store down the street that makes fresh juices! Can you say amen?

I honestly can't remember what was in this but it was delicious.

I started working weekends for an online company telecommuting. Which means i'm working a lot more now.. aka why i haven't written anything in a while. Nothing really crazy to report here.. you know work is work. 

I met with a nutritionist. Her name is Juliane and she was amaze balls. The only downer to her being so awesome was the new dietary restrictions i was given.. No dairy (duh), no gluten (double duh), no dried fruits or fruit juices and NO SUGAR. Now having lived more than half my life learning to not become attached to foods because i know in some way or form things always seem to be "bad" for me.. no matter the actual nutritional value. So when i heard i had to stay away from sugar i really wasn't concerned. 

Gluten free oats, frozen mixed berries heated up, walnuts and banana.. my now go to breakfast!

This was the book i was told to get by Juliane, yet to read it all the way through since i got it today but i'm excited for this change! Fuel your body not the disease.

HOLY HERX! I don't know how to emphasize this more. Starting on the 4th i stayed away from sugar. After 24 hours i had a severe migraine, and here is little naive old me thinking this was how it was going to be for a few days. Now let me reiterate.. when you have lyme disease nothing is ever "that simple". Three or so days go by then i notice my stomach is getting super sensitive. I then start alternating in between a low and high fever for another week, i then loose my voice, stomach is having pains and my body pains start worsening. Now mind you i totally doofed up and forgot to check the lunar calendar, because behold the full moon we had. In case you didn't know full moons somehow tend to make my pain and symptoms more aggressive and worse. So here i am a solid ten days after my last piece of sugar (sort of.. i cheated and had a SMALL piece of chocolate and lordy did i pay for it) and finally starting to get over the fevers and throat things. 

Oh and how did i almost forget.. I got the okay to drink again! THANK YOU UNIVERSE. So i had some clear rum and tequila the other night with total success! Well partially.. i apparently lost my tolerance and became a lightweight.. and my wallet is okay with that! haha.

Me and the boyfriend out in Beantown :)

I started working at my work's apothecary part time, four hours doing my normal desk job and four hours down in there. I honestly love it because it breaks the day up, not to mention since i've been on more than half of the things in stock its a good learning experience. 

I finally have been feeling well enough to start really moving around. I got so serious i even re-instated my gym membership! I am yet to go since this all happened today but i will start back slow soon which i'm super excited for.

Its been so nice being so close to so many friends and new activities out here i even got to go bouldering the other day! I plan to try as many new activities as my body will allow now being close to the city. Not to mention its fantastic to be able to go out and not worry about an hour plus ride home!!

A few weeks ago when things were pretty terrible i received this in the mail:

This was an awesome reminder that you are not alone and there are others in the same place you are all over the world. Be good to another and be kind.

Here's wishing well to my fellow fighters. Keep on trying it'll pay off. Here are some little words to live by to help keep your mind in a good place!

<3 Namaste lovies! ॐ

3.23.14

So you may have noticed that over the past few posts things have been far and few in between. Now this took a lot of serious thought writing this post and for the past month or so my thoughts really went to a dark place that i know so many others with chronic illnesses sadly understand so well. Lately i have been going through some major and much needed changes in my outlook on life, my path, lyme disease and how my actions affect others. 

I have recently become super fed up with the fact that my body constantly fails me. After an incident shortly after my last post, i decided that it was time to start back at light exercise. My knees, hips, wrists, shoulders and fingers have all become increasingly weak and have been causing me much pain. There was a period of time where i was literally collapsing because my knees were too weak to hold me up.  After a few really embarrassing stints of this i decided it was time to try something new. 

I decided to start back up with practicing yoga. I always loved yoga and was religious about my practice for a few years prior to when i started to get really sick. Now keep in mind i have not really worked out in about half a year and i haven't gained any weight either (thank god), so transitioning back has been quite the progress. I started with one hot 90 minute vinyasa flow class a week, modifying almost every pose because my wrists were so weak they felt like they would snap. To now being able to complete a whole 50 minute strala yoga dvd. The progress is slow and small but never the less progress. I notice the immediate effects on my mental state after yoga. I immediately feel more grounded and at peace. I feel less like i am thrown into chaos but more as a buoy bobbing with the incoming waves, floating yet still in control, anchored to the sea floor. 

I have since also stopped seeing my practitioner in Rhode Island. I wasn't feeling much of a benefit from treatment and just felt worse and worse. Although i can't say i feel incredibly better i can say that i feel like things are for the most part a bit more livable. Now whether or not this was a dumb decision i don't know right now, but only time will tell. 

At the end of April i have scheduled an appointment with a LLMD who actually is a doctor in my building at work. I decided that its about time i try to see how a physician who relies on antibiotics and combats the symptoms with supplements, IV therapy (vitamin infusions), and other alternative treatments like cranio-sacral work, massage, acupuncture etc. I truly do feel so very fortunate to be working in a facility that i am able to have access to all of these things in the same building, and get an employee discount on services making everything more affordable.

Although i still do not physical feel any better than i have in the past, i feel that focusing on the positives has helped me move on a little. I still sleep all the time, sadly through weekends and plans with friends, still feel all the pain that i have all along and i feel as if this will not change for a long time. 

All in all a few other big things have happened and has truly made me question a lot of decisions i have made. I in the past have put my health on the back burner to participate in things that in turn made me worse (i.e. new year's drinking… oh hell no). Trying to pretend like i am still capable of being the same person i was, doing the things i use to do. I am no longer that person. I feel i have grown to be a much more mature woman, who understands when to say no and realize its okay to be selfish to be more healthy. At the end of the day  realized what are healthy decisions for my soul, my body, my heart, my emotions. I now wake up every day thankful for the things i have in my life, thankful for what health i do have, and welcoming new opportunities to learn, grow and evolve to be the person i am meant to become.

After some long thought and soul searching i finally feel more peace than ever. With some much needed closure with some negative people in my life and the addition of some amazing positive light, i feel as if i am ready to take on whatever comes my way with grace and peace. 

Think of your decisions and ask yourself is this nourishing you or feeding into disease?

<3

Reflection

Days like this make me wonder if things will ever get better. I feel as if i can never really move forward in my life having this disease constantly clawing at my ankles whenever there is a glimmer of hope. Not to downplay the great events that have been going on lately, but i just feel as if i cannot experience happiness to its full extent. 

Having Lyme Disease is a constant test of your perseverance and will to survive and thrive in the chaos and always changing landscape that is your health.

Lyme disease has taught me many things, most of all to be grateful for the things you have in your life at the moment. But right now things seem hopeless.

I've become really good at hiding my pain, hiding my frustrations, hiding the things that i am not ready to accept to myself. Lyme has defeated me.. broken my spirit and love for life. 

Lyme fucking sucks. 

2.12.14

Hello everyone! 

So as you can see i haven't written anything in a while here. Honestly i forget people even read my blog. I originally started this as an online journal to catalog my experiences in figuring out what the hell is wrong with me. Over the course of this blog and my journey through my Lyme disease i have made many good friends from all over the globe. In which you were all successful in reminding me how bad i am at updating my blog as of late.. so thank you for the emails to kick me in the ass :)

So good news, bad news..

Recently i left my last job managing a physical therapy clinic to move to a larger,  integrative and function healthcare facility. This move was strategically made in order to fit my needs as of this moment. I needed to move to a company where taking a day off because i was sick wasn't such a big deal, i needed better benefits and as a bonus i actually see a few doctors in my new facility now. Staff perks include free treatments (yoga therapy, craniosacral massage, energy re-alignment, IV therapy etc), reduced copay and out of pocket expenses and more. Although this is now a solid 45-60 minutes to drive to work now, i think this was a great move for myself now and for the future. 

OKAY enough about me gloating about my new job (currently on week 2). Other things… Since starting my new job, i'm not sure if it was random timing or if its the mercury retrograde or the actual job itself but something is taking a huge tole on me. My energy is way down, my barriers are down making it difficult to not be empathic and take on others negative emotions, the amount of foods that are "safe" has decreased significantly, body aches and pains are becoming increasingly difficult, and my headaches and light sensitivity along with VERY difficult body weakness has returned. Oh did i mention nausea too? I am now seeing a lyme specialist once every week for a laser treatment and every other for a full treatment. I have an appointment for a few weeks out to have a consult with the head MD at my facility to talk about alternative treatments since i find I'm not doing so well just with my one doctor. And then next week i meet with a NP at my work to get orders signed off to start a magnesium IV as per orders from my other lyme doctor. I do notice when my magnesium levels are really low i do have low energy and extreme weakness, so i truly hope this will make a difference.

This past weekend i got certified as a Reiki level 1 practitioner!! I am super excited to be on my journey in my health and wellness fields. I am looking into getting my RYT to become a yoga teacher as well. Although that probably wouldn't happen for another semester or two. 


Anywhos i'm ranting and this will be edited and have fancy photos and whatnot added in later.

Just so everyone knows i am alive and doing relatively okay. Just keep taking it day by day… one day at a time.

-K

Happy New Year! 2014

HAPPY NEW YEAR! 

Officially the first blog post of the year and on the first day!

So as this is the new year i feel the need to somewhat acknowledge the whole resolutions thing.

Personally i am not a big fan of resolutions, but i do encourage goals! My goal that i constantly strive for is to get better at taking care of myself. Now as i am still in what i call the beginning stages of coping with a chronic illness, i find that there are tons of areas for me to improve upon.

First and fore most last night was new years eve. YAY! I spent the night with good friends and my amazingly supportive boyfriend and i broke my own rule and drank. Now for those of you who have Lyme Disease you know how important it is to avoid alcohol, sugars and grains since they all go against your body trying to detox. Well i figured it was a special occasion so why not. Well i remember why not… Not feeling super hot today. Slept most of the day and now that i am awake i am dealing with a seriously still neck, sore muscles in my back, upset stomach, clear digestion issues. etc.

All geared up for new england weather.. and yes that tiara says Ciroc (taken approx 1:30am mind you)

So now i learned that lesson alcohol is again off the table. Now i am going to make an effort every day to get better at eating foods that will aide my recovery, get moving more even when i don't have the energy, listening to my body more and giving it what it needs, get better at detoxing, get more organized and stop listening to negative people. 

I have found through this journey in dealing with Lyme i have sadly lost a few friends. I find that people often show their true colors when you are in need. After i went to the hospital for my heart problem i made the decision to not drive myself for a while out of fear that i would have an episode behind the wheel. Now this is when i started to notice "Friends" who i always made plans with, drove to go see.. those were the people that all of a sudden weren't able to make time to come see me or didn't make an effort to communicate with me.

So 2014 we are onto bigger and better things!

So making baby steps but my first big thing of 2014 i did was actually take my Detox 2. Now i have been dreading taking this ash looking stuff because of all of the negative hype my LLMD was giving it. 

Step one: Start at ash looking stuff and hype yourself up to do this.

Step two: Take Detox2 and put 1/4 tsp in a shot glass filled with water. Now off to mix and enjoy!

Step three: Down the hatch!

A closer look at the beast.

Final verdict: Not as terrible as it looks or as the face i make at the end of that video haha. The texture is honestly what surprised me the most since its pretty gritty like sand. The taste is exactly what it looks like. Tastes like what i imagine the ashes from cigarette do. Not that i'm going to be searching through ash trays to test that out any time soon..

So i conquered one of my fears. Now your turn!

Happy new year, can't wait to see what 2014 will bring…

12/28 update

Happy Holidays everyone!

I hope you all had a happy Hanukkah, Merry Christmas, and Joyous Kwanza.

I just saw my LLMD again and we have switched up my meds and routine yet again. She said it was because my body won't tolerate us moving any faster that we need to go slow with the heavy meds.

Good Morning pill routine

Betaine Hydrochloride 1 pill, 3x daily- to help with digestion

Iodomere 3 pills, 1x daily in the morning- to help with thyroid function.

Calcium Lactate 2 pills, 2x daily (afternoon/night with meals)- to help with heart palpitations

Symplex-F 2 pills, 2x daily (morning/afternoon with meals)

Detox 2, 1/4 tsp daily before bed.

Along with these meds she directed me to eat pumpkin seeds to help aide digestion and fight off parasitic infections , magnesium spray, epsom salt baths (to help with detox)






Detox 2 is no joke. So first impression was this is going to suck. Considering when i was in my doctors office she was explaining to me that both her and her office manager have been on it and it was not easy to take. It looks like a charcoal ash that comes in a small container. The directions say to mix with a small amount of water, down it like a shot and then down water. Now here comes the unfortunate part.. it tastes like it looks (like ash) and you can't have it with any food. 45 minutes before you eat and it needs to be taken on an empty stomach.

So this is a few days after i saw her (the 26th) and i am definitely noticing some new side effects.  My LLMD has explained to me that sometimes when the parasites and bacteria die off you can have their emotions. Either rage or feeling as if you are grieving are common when people are fighting Lyme. I have definitely been feeling equal sides of both lately which can be very confusing and they can switch very fast. Trying to keep my emotions in check can be more difficult than normal which is just another added obstacle. Also the heart palpitations are back, along with anxiety, fevers, swollen glands, increased paranoia, shakey/unstable hands, increased muscle fatigue and general fatigue. I can't say that i have high hopes for these changes in medication but then again it may be just because i'm feeling pretty down as i write this.

As the new year approaches, heres to wishing for a healthier and brighter 2014!